Search results

I thought it was a generally good article, although short. Perhaps it will be useful for advocacy. I think Katharine has an association with AfME. I think this bit quoted below was a bit troublesome though, it's the part where the terms used by the proponents of psychosomatic theories are...

This is interesting. I've just read the brief article so far. So, these results depend on the accuracy of the 'novel quantitative MRI technique' to reliably determine actual oxygen consumption. But, if they are right, it suggests another thing that could be going wrong in ME/CFS brains...

A diversion from Veronica's evocative poem, sorry, but it was interesting to read about Oliver Sacks. I've commented elsewhere about the BPS-like assertions in that book (edit - here). Sacks suggested that having a migraine was a way for a non-assertive/powerless person to justify stopping...

I wrote the following as part of a review of an UNREST education resource (a video): I don't think we have any evidence that people are getting ME/CFS as a result of a late primary HHV-6 infection i.e. after say age 5, although it would be interesting if we did.

It seems to be a blow by blow account of group set up to push forward the Functional Disorders agenda. Reading between the lines, and even the actual content at times, thankfully, it's sounding pretty ineffective. I think it's another one for the 'I can't believe that anyone thought this was...

Part of the ETUDE programme: Encompassing Training in fUnctional Disorders across Europe

While the responses in the UK parliament (and some of the questions too) indicate a lack of understanding of the issue, the motion posed in the Welsh Senedd looked spot on. I think those words, with the addition of a research funding ask, would be a good start when people are defining what they...

Another problem I guess is that the lymph node extracted from the living donor may not actually be one where something problematic is going on. If researchers had access to donated bodies from people with ME/CFS who have died, what would be the things worth looking for in the lymph nodes?

This is AI generated, about the three association fibre locations mentioned by the 2025 study: Right Superior Longitudinal Fasciculus (SLF): The SLF is a large association tract that connects the frontal lobe with the parietal and occipital lobes. It runs in the white matter lateral to the...

My set point for brain imaging studies is skepticism, dialled up higher than my usual level of skepticism, so, that's pretty high. But this is a decent sized study and they have made a good effort to match the controls. Also, this work has been led by Zack Shan in Queensland, Australia and he...

Yes. The irony is that the authors could have easily made an evidence based statement along the lines of 'Risk factors for development of ME/CFS are still very poorly known. Potentially, everyone, regardless of sex, ethnicity and background, has some risk of developing ME/CFS during their...

I missed this second webinar. But, yes. A standardised and efficient modern method of collecting user satisfaction from clinics is fine, that is questions along the lines of whether you feel better equipped to manage your disease, and collecting qualitative feedback about the service. That...

I found this Facebook post: It refers to a database for recording exposures to chemicals that New Zealand doctors have access to. People can ask their GP to record their exposure to a particular chemical - high level acute exposure or lower level chronic exposure. Obviously there are issues...

@SNT Gatchaman

Yes, I wondered that too. The 'Towards a Better Understanding... 2023' paper says But that's not an individual's lifetime 'susceptibility to ME/CFS'. EBV is not the only potential cause of ME/CFS. To recap, this is what they said "Myalgic Encephalomyelitis/Chronic Fatigue syndrome (ME/CFS)...

Thanks very much @Nightsong. The version of the Purple Book cited is the 2022 one, 13th edition. I think the edition you have quoted isn't the 2002 edition, is it the 2022 one?

I support that idea. Perhaps the problem with the journal would give the authors a reason to have another shot at the paper. At the very least, it would be great if they don't publicise the paper and don't attempt to use it for advocacy. I thought I might start going through the statements to...

It did happen. I was allowed in, although I missed the first 20 minutes (probably the most important unfortunately) due to time zone issues (ie waking up for 4 am) and a bit of faffing around with extra security because apparently the webinar had 'sensitive content'. There wasn't much content...

I'm not sure that I believe this idea that you can predict who will get ME/CFS by the number of symptoms during the acute phase. I think that if you have a whole lot of persisting symptoms, it would be a lot easier to endorse having them during the acute stage. Whereas, if you just have a loss...

Really nicely explained. Thank you.